Meltdown Bingo: Autistic Edition

TW/Content note: Abuse of autistic people; demonstrative use of disability slur; self-injury; in-depth descriptions of being in the middle of a meltdown.

UPDATE: The article on The Mighty that led to this post has been taken down.

UPDATE 2: It has been suggested to me that I note that the author of the piece, while writing as a parent, is also autistic, and that the original piece was co-authored by her autistic son. I take issue with aligning oneself with an outside-looking-in perspective in how one writes about a marginalized group’s experience while also wanting to be seen as part of that group, but the main discussion should be about the experience and framing of meltdowns from an autistic perspective.

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The Bingo Sheet meme has existed as a way for marginalized communities to catalog and make fun of the bad things they experience. This usually takes the form of quoting common hurtful, invalidating or dismissive things they hear from other people. For instance, there is American Racial Incident Bingo for the ways in which white people respond badly to instances of violence against people of color, and Fat Hatred Bingo for the ways the concern trolls and other people justify bias against fat people.

So, given this context, the autistic community was none too happy when an online disability publication called The Mighty published a Meltdown Bingo… as written from the perspective of a parent whose child is experiencing an autistic meltdown. (Here’s a DoNotLink if you’re curious.)

Meltdowns can be unpleasant for onlookers and loved ones, but first and foremost, they’re awful for the autistic people going through them. But this meme reframes it so that the autistic person’s well-being is the secondary concern… which turns the usual intent of the meme on its head.

However, because meltdowns (and what follows from them) are horrible, there should be a Meltdown Bingo… from an autistic perspective. I’m posting one here, as well as explanations for each square, so that people can have a better idea of what a meltdown actually is and why treating it as something that an autistic person does to the people around them is a problem.

Anxiety / Sensory / Trauma Triggers: A meltdown is basically an anxiety attack on steroids. Autistic people frequently have heightened sensory sensitivities to things like sound, touch or texture. Things that are mildly annoying or even enjoyable to a lot of non-autistic people feel like an attack to us. Many of us are also trauma survivors or have comorbid anxiety conditions, which being autistic only amplifies (because, contrary to common belief, we are not in fact mechanical beings made of pure logic). When we experience a pretty severe trigger, or multiple triggers within a short amount of time, a meltdown can happen.

Feeling Trapped: This can overlap with the above, but it can also be a compounding factor. For instance, if an autistic person is in an overstimulating environment which they’re not allowed or feel obligated not to leave, they may experience a meltdown that they otherwise would’ve been able to avoid by escaping the overwhelming situation. This can also take place in a social context, where someone feels bombarded by criticism, too many demands, or just too much information and can’t figure out a way to disengage, leading to a meltdown.

Hunger Cycle: Another thing that autistic people struggle with is executive functioning — basically, getting up, getting going and following through on tasks. This extends to meeting basic needs like feeding oneself. And when you can’t get up the wherewithall to feed yourself, it becomes a vicious cycle, because the hungrier you are, the less you can make a decision about what to go eat and act in that direction. And when you’re hungry (hangry, even), you’re more susceptible to all the other meltdown triggers.

Failure: Frustration is a major meltdown trigger for a lot of people, and frustration at oneself and one’s own limits is no exception. This can trigger a meltdown all on its own, or can be a compounding factor once a meltdown’s already on the way and the person can’t find a way to prevent it (See also, Losing Control and Internalized Ableism).

Disruption of Plan or Routines: This is the other part of frustration — frustration at the situation, and of lacking control over it. Many autistic people thrive on scripts, plans and routines to make it through the day, and tough situations in particular. If something gets thrown off, especially in an already tense situation — for instance, if an autistic person’s flight is delayed and they’re missing their connection after having gone through the stress of dealing with a crowded security line — that little sense of security falls apart and all bets are off. As you can see, a lot of meltdown triggers come back to anxiety in one way or another.

Losing Control: A lot of people seem to assume that autistic people are unaware of how they’re coming off. We’re not, especially as time goes on. But self-consciousness is the opposite of helpful once the Meltdown Express has left the station. It adds pressure (in this case to keep or regain composure), and any additional pressure on top of whatever prompted the meltdown in the first place is only going to prolong it.

Shaking: Meltdowns can make you feel physically tense. For me, it feels like someone has pressed something freezing to the back of my neck, or laid something extremely cold over my shoulders. If someone has a motor tic or a tendency to twitch, it might also become more noticeable during a meltdown.

Can’t Move: One reaction to a meltdown can be an inability to get out of the overwhelming or anxiety-provoking situation. This can be an executive functioning problem of getting the momentum to start moving. However, it can also be a “play dead” type reaction, (often irrationally) hoping that if you can stay still and quiet, people won’t notice you and will leave you alone and give you the space you need to recover.

Losing Speech: Some autistic people never verbally speak, and some don’t type or use other forms of communication. During a meltdown, autistic people who normally speak (or use nonspeaking forms of communication) may lose that ability. This can be for reasons including but not limited to concepts no longer translating into language; being unable to cut through their own thoughts or the noise in the surrounding area enough to speak; or being unable to focus on producing speech while trying to regain control over oneself in other ways.

Flat(ter) Affect: A lot of autistic people also have a flat affect — limited facial expressions and a flat, monotone voice — but not always on a consistent basis. In the middle of a meltdown, having an affect can be too damn hard, and (contrary to the kind of behavior people associate with meltdowns) an autistic person experiencing one can seem less expressive than usual.

Startle Response: Anxiety and sensory assault can cause a meltdown, but meltdowns can also make them worse… both in terms of lowering the threshold for a serious startle response and making it more pronounced than it would be otherwise. This is why you don’t want to touch an autistic person or invade their space without their consent during a meltdown if at all humanly possible.

Run & Hide: An alternative reaction to not being able to move during a meltdown is to flee. This can be to avoid whatever trigger caused the meltdown, or to avoid people and be able to (eventually) calm down on one’s own terms without the pressure of people watching.

FREE SPACE: Nothing Is Beautiful & Everything Hurts: Because that’s pretty much a summary of how a meltdown feels.

Can’t Stop Crying: This is what it sounds like. Any (perceived) pressure, internal or external, to stop crying or otherwise appear outwardly calm will only make it last longer.

Directionless Anger: At its height, a meltdown can involve more than just anger at whatever caused it (though that’s certainly part of it). It can be anger at everything that’s remotely like it. Anger that such a thing is even possible or able to exist. Anger at your own helplessness. Anger at everything and everyone. Trying to hold that anger in is frustrating. On the other hand, venting it and breaking something (or hurting someone) will result in regret and shame.

Self-Injury: One of the ways that a person in a meltdown might try to vent or process these overwhelming feelings or sensations is to attack oneself. A person can be self-injuring for a number of distinct but sometimes overlapping reasons. It might be to drown out external input or one’s own thoughts with a more powerful sensation. It might also be an attempt to punish oneself for either a failure that led to the meltdown or the meltdown itself. Self-injury isn’t necessarily the same as being suicidal, and restraining or otherwise using physical force on someone who’s self-injuring can do more harm than good.

Internalized Ableism: In general, internalized ableism is taking in the negative ideas people have about disabled people and imposing them on oneself. In this context, it’s closely tied to the feeling of losing control, and it can prolong a meltdown by adding intense feelings of shame, worthlessness and self-hatred to whatever emotions the person is already experiencing. For instance, a person might feel like they’re a burden on the people around them; that they’re melodramatic or oversensitive for having a meltdown over what other people consider a minor issue; or that they’re weak for not being able to stop the meltdown once it’s started.

Sensory Overload: This is similar, and often tied to, having a heightened startle response. Leading up to a meltdown, each unpleasant sensory experience feels more painful and/or frustrating than the last. Once someone’s in a meltdown, their ability to cope is essentially gone, so every additional bit of sensory bombardment’s going to hurt a lot more than it usually would.

Fear of Punishment: There are few emotional experiences more unpleasant than feeling like you’re going to be punished for something out of your control. And for many autistic people, this is a very well-founded fear, as a lot of us have experienced anything from being condescended to to being physically abused or coerced after already having to go through a meltdown first. Like many other things on this list, this fear only makes the meltdown last longer.

Reflexive Aggression: As I mentioned before, meltdowns can actually be unpleasant for other people involved in the situation, and not just because they’re hard to watch. If someone gets aggressive during a meltdown, it’s usually out of rage, fear or some combination of both and not out of malice. This is another reason why putting more demands on or getting in the space of an autistic person having a meltdown is not a good idea, and backing off and waiting for them to take the lead is preferable.

Invalidation: Lastly, there are the common responses to meltdowns. One of the less outright dangerous but still unhelpful and often callous responses to meltdowns is dismissing a person’s feelings and belittling them for reacting so strongly. Common examples of this include “You’re overreacting!” or “Don’t be such a baby!” or “You’re just being manipulative!” I’ll give you three guesses as to what effect this will have on a person having or about to have a meltdown, and the first two don’t count.

Public Humiliation: Another thing that people who believe that meltdowns are a choice will do is add to whatever embarrassment the autistic person is already experiencing by bringing attention to and making fun of the person’s meltdown. One example of this is how some particularly awful people film their autistic loved one (using that term loosely here…) having a meltdown and put it on the internet for the public to see. This doesn’t exactly help to establish trust or security in the people who are supposed to care for you, which feeds into anxiety and trauma, which lead to meltdowns, so… yeah. Don’t do this.

Shaming: This encompasses both of the two above categories, but is a bit broader too. It can also include name-calling (“You’re acting retarded!”), making it all about the other person’s reaction (“You’re embarrassing me!”), and accusing the autistic person of purposefully having a meltdown (e.g., calling it a “tantrum”). This won’t just make the present meltdown worse, but future ones as well. Refer to Internalized Ableism above.

Talked About As If Not Present: Some people will respond to a person having a meltdown by assuming that they’re automatically incompetent to understand their own needs or make their own decisions, and talk to whoever they assume to be the person’s caretaker about how to deal with the situation. This is generally on the more benign side of things, but it’s still condescending and obnoxious, and it only adds to the feeling of having no control over one’s situation. Unless it’s an emergency and someone’s going to get hurt, it can wait until the person themselves is ready to respond.

Restraint / Seclusion / Punishment: On the most severe end of things, sometimes people will use physical or other forms of outright coercion in response to meltdowns, either as a supposed safety measure or thinking that it will force the person to stop. Short of stepping in to immediately protect someone from being injured and nothing further, this is a terrible idea. Putting a fire out with gasoline level terrible. Invading Russia on the first day of winter level terrible. Really, unless you want to make this meltdown and every one after it a lot worse, do not punish someone for having a meltdown.

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Now that I’ve gone through the list of what causes meltdowns, why they suck, and what’s not helpful to do when someone’s going through that, here are some things that help me to avoid or get through a meltdown. They’re not surefire methods, but I’d like to think that they could be helpful starting points.

Sensory aids: For lack of a better term. These are things that can help an autistic person manage sensory overload. They include things like headphones and dark glasses to block out unwanted stimuli. They can also include objects that a person can fidget with or run their hands over for pleasant sensory input. I will often be wearing noise-cancelling headphones at crowded social events. If I have a meltdown at home, I’ll often wrap myself in my weighted blanket while hugging something to calm down.

Prompts: I might not think to leave a stressful situation or do something that could rather easily lower my stress level during a meltdown. If someone there who knows me and what works for me can remind me — either by asking if I want to do it or suggesting that I do — I can sometimes get un-stuck and come out more or less okay. The more specific this is, the better. “Do you want to go get some food?” may be too open-ended because it requires me to come up with what kind of food I want and decide how I’d get there, whereas “Do you want to go to the store down the street and pick up a loaf of bread?” lets me start with something specific and come up with alternatives if needed. This is most helpful leading up to or coming down from a meltdown, and not as useful at the height of one where almost any request or suggestion will feel like a demand.

Emotional support (stuffed) animals: Soft, squishy and/or fuzzy is as awesome to my senses as loud noises are bad for them, and having something to hug or wrap myself around is very comforting. Also, sometimes it’s easier to believe that my cat loves me than it is to believe that the people around me will still like me after I’ve had a major meltdown.

Music: Like a lot of autistic people, I’m not all that good at making transitions. For me, this is especially true in the realm of emotions. I can’t flip a switch to go from anxious and upset to happy and calm like it seems a lot of people can. But what can get me there eventually is listening through music I’m familiar with. I might start with something angry-sounding, in a couple of songs be able to move on to something sad, then after a while of that, something calming, and eventually get to something that’s funny or energetic. This allows me to feel the feelings and work through them at my own pace, while also blocking out unpredictable sensory input and replacing it with something familiar and controlled.

I am the mom of a multiply disabled teen age daughter, including autism. I also blog and vlog our lives. I have often said that when my daughter is having a meltdown she is suffering. I did once post a video of her melting down. I justified it by saying it was educational. Then an autistic adult asked me to take it down and explained why. Then I understood the error of my thinking. I did and now I only post our happy, positive moments of hope for the world to see. Seeing herself melting down is also not the memory I want her to have of our life together. Long after I am gone, I want her to be left with videos of us being happy together. I want her to remember that I loved her more than anything else! Well. I’ve rambled on enough! Thanks for explaining all this for us! I truly appreciate this!

Correlated With the Five Temperaments: (NOT A DEFINITE GUIDE)
Choleric: (Driving Need: CONTROL)
Triggered by (real or perceived) loss of control, responds with reflexive aggression, fears restraint and other punishment, made worse by being talked about as if not there recovers with music/other sensory diversion
Melancholic: (Driving Need: PERFECTION)
Triggered by disruption of routines, responds with crying a lot, fears internalized ableism, made worse by invalidation, recovers with emotional support animals
Sanguine: (Driving Need: FUN)
Triggered by (free space), responds with directionless anger, fears public humiliation, made worse by shaming, recovers with sensory aids
Phlegmatic: (Driving Need: PEACE)
Triggered by sensory overload, responds with a flatter affect, fears shaming, made worse by fear of punishment, recovers by sleeping
Supine: (Driving Need: To be NEEDED)
Triggered by failure, responds with loss of speech, fears public humiliation, made worse by being talked about as if not there, recovers with promots

Reblogged this on Lost and Found and commented:
Reblogged from Silence Breaking Sound
This is an excellent breakdown of many of the triggers and kinds of meltdowns autistics have. I hope it’s helpful for those wanting to understand their loved ones and help rather than hinder their recovery from them. I also think it’s validating for us, as autistic, to remind ourselves that we are not alone in these responses. This is, for better or worse, “normal” for us. Understanding my triggers and responses has helped me process them more quickly without the guilt and helpless feelings I’ve lived with all my life.

Some of these are things I would associate more with a shutdown than a meltdown (flatter affect, can’t move, loss of speech), though honestly both are reactions to the same kind of problems… are you considering both to be meltdowns, here?

Re the trigger warning on abuse of autistic people —
among the folks who are triggered by reading about abuse of autistic people,
is there even _one_ who isn’t also triggered by reading about abuse of people?

Thank you so much for your well-written, detailed breakdown of this awful experience. As a parent, I have only been able to guess at what this is like for my children, and it’s so helpful to have a more complete picture. In particular, I’ve often wondered how aware they are of what people are saying and doing while they’re having a melt-down. It’s helpful to know that they are aware.

From my perspective, it feels like they are completely unreachable – trapped in their suffering and cut off from any help or comfort I can give by an invisible force field. It can be extremely painful as a parent, and was especially so when my girls were very small, to not be able to help or comfort them. I felt like I was letting them down.

Unfortunately the best thing people have been able to do for me is get the stressors away and make comforting things available so I can actually come down from it eventually. But I appreciate the people who do their best to help.

My son is 14 ,I was told he had adhd at the age of 8. I have always thought he was a little autistic, but reading this has convinced me he is. Will it help him in life if I was to get a Dionysus with the doctors? As My son can not organise himself, struggles with relationships, etc and I worry about how he will cope with the world as an adult. X

This is actually a topic that could merit a whole post unto itself. There are both pluses and minuses to a formal diagnosis, especially as a child (or someone who otherwise lacks the full range of legal and social rights, such as people under guardianship or people living in institutional settings).

On the one hand, you (and your support people) know what you are and have a way to frame and better address your support needs; you have access to autistic community; you have more access to accommodations on the basis of autism; and you’re less likely to be diagnosed and treated for the wrong condition.

On the other hand, because of all the myths and fears about autism, a diagnosis will make someone a target for anti-autistic bias in particular from teachers, providers, peers and the public. People will also recommend things for an autistic person that they wouldn’t recommend for a person who had a condition perceived as less severe… intensive coercive behavior modification, quack treatments, and (as someone reaches adulthood) pressure to be placed under guardianship and in segregated settings such as sheltered workshops and group homes.

As someone who wasn’t diagnosed autistic as a kid and dealt with both the consequences of misdiagnosis and with people thinking that I was just a spoiled brat asking for special treatment, and who was alone for a lot of the time, I lean towards saying that, yes, having a formal diagnosis or at least the knowledge that you/your loved one is autistic is better than reverse. I know that’s not been everyone’s experience, though, and I do think that, if/as you pursue the diagnosis process, you should also be looking into resources (whether it’s blogs like this one; more formal guides from advocacy agencies; or local groups of autistic adults) that will help you in advocating for him. In any case, as a person with a disability (whether it’s ADHD, autism or both), it will help your son to learn self-advocacy skills and learn from people who have developed their own coping and other strategies as well.

Just an addendum to this, and I’m putting a trigger warning here for legal discrimination just in case.

Anyone like your son who is thinking of being tested should first look at what the law says in their area. Not everyone reading this blog is going to live in the US, Canada, UK, etc. and even among those countries there are significant differences in how one gets an autism diagnosis and whether that diagnosis will have legal ramifications.

For instance, in the US school children can be tested for autism through their schools – but poorer school districts (or private schools on a limited budget) may refuse to refer verbal children for testing because a) testing is expensive, and b) if the child tests positive, there are added costs to providing that child with accommodations. Those accommodations might also be so poorly done – and deliberately so, because the more kids they scare away the less they need to spend on accommodations – that parents are forced to homeschool, which might mean that one parent has to quit their job and the family is less well-off.

If the school won’t pay for the testing you may have to pay for it yourself – your insurance might not cover it – and that can be very expensive.

Outside the US – and especially in Eastern European countries – you have to worry about whether diagnosis could affect the autistic person’s access to basic human rights. In some countries a diagnosis of autism can lead to arbitrary and irrevocable institutionalization; in others autistic people are forbidden to drive, to adopt children, or to be bonded. In my province of Canada in the 1980s autistic people weren’t permitted to take out student loans, and even today in some parts of the world autistic people may be considered of lower value when it comes to medical resources such as donor organs and even blood.

That said, there are of course huge benefits to a diagnosis, as S.M. Neumeier says. But it makes sense for your son to look into this and decide for himself – with his parents’ guidance, of course, because he’s only 14 – whether getting an autism diagnosis is right for him.

Wow, thank you for this post…..it is brilliant! I identify as a neurodiverse mum and I have an autistic son(4 yrs old) this is so well written and such a great insight into some of the things my son may be feeling during a meltdown. I am so grateful for the insights and advice☺ will be sharing it with family! ❤

Hi. I was looking through some bingo cards and stumbled on this. I was struck by the free space and just wanted to come by and say thank you for making it and wording it that way to overturn that meme/saying. I would see people posting “everything is beautiful and nothing hurts” and feel the opposite, but feel that I had no place to express that for fear of being accused of being negative or “but you look healthy.” I know this is an old post, and I know I’m also not autistic (though I have family and friends), but thank you.

Reblogged this on Freeing My Heart and commented:
I want to pass this along to some others for discussion. I have had my boundaries violated so many times I’ve lost count. Not even knowing what my human rights are, reading all of this including other posts about common abuses many autistics endure validates my own perspectives, shines light on my suffering.

This is so well explained, I will certainly hand this out to as many people as possible. If only medical staff, social workers, police and teachers could stumble upon this post! I’m also on the spectrum, and late diagnosed. Your blog and others from people on the spectrum really have helped me going through a really bad 6 months. Thanks so much!

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This blog is an expression of my own experiences and viewpoints. It doesn't represent the positions of any organization I work for or with. Also, my having a bar license does not mean that I am a legal advice dispensing machine. You are not my client.